Rob Lowe: Who Cares for the Carer?

Actor Rob Lowe, a long time advocate for caregivers, urges those in caregiving roles to take some time for themselves, too. JASON KEMPIN/GETTY IMAGES FOR PROFILE

An estimated 43.5 million Americans are taking care of aging relatives and friends, sacrificing time, money and sometimes their careers and personal health. They are doing the work of professional caregivers, who spend years training for the job. As baby boomers age, the demand for unpaid caregivers is rising. Meanwhile, thanks to smaller family sizes, higher divorce rates and increasingly demanding jobs, the number of people available to take care of their elderly loved ones is shrinking. A growing number —25 percent—are between the ages of 18 and 34. 

If there’s one thing that’s bipartisan, it’s caring for the elderly. In January 2018, President Donald Trump signed the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act, a law that directs Secretary of Health and Human Services Alex Azar to develop and maintain a strategy to support caregivers in the next 18 months. Ten months later, implementation has been slow, to the frustration of Democratic Senator Tammy Baldwin of Wisconsin, who introduced the bill in the Senate along with Republican Susan Collins of Maine. 

In September, Congress finally allocated $300,000 to establish a family caregiving advisory council, which will address potential policy solutions. Additionally, 36 states have passed the Caregiver Advise, Record, Enable (CARE) Act, which requires hospitals to identify the patients’ caregivers, keep them informed and provide basic training for medical tasks they’ll be expected to perform.

Embracing Carers, a global initiative launched in 2017 by pharmaceutical company EMD Serono, hopes to call attention to the needs of this overworked and underappreciated community. According to the initiative, nearly a quarter of the 3,516 unpaid caregivers they surveyed in 2017 said their careers had suffered because of caring for a family member. In honor of National Family Caregivers Month this November, actor Rob Lowe (St. Elmo’s Fire, Parks and Recreation) teamed up with the company to tell his story and send some encouragement to the millions struggling to care for a loved one.

I had my first experience with unpaid caregiving fairly early. My father, Charles, was diagnosed with lymphoma at age 50. I was 26. Luckily, he was financially successful and had a loving wife, my stepmother. It was challenging, but she was there for him. He got through it and went into remission.

Two years later, they divorced. I’ve always thought it had to do with the stress that resulted from my stepmother taking care of my father during his illness.

In my late 30s, my mother, Barbara Hepler, was diagnosed with stage 4 breast cancer. That was when I was introduced to the front lines of what so many millions are experiencing. She did not have a husband or a significant other, so it fell to me and my two brothers to navigate everything from her initial diagnosis to doctor shopping, treatment options, driving her to appointments and, finally, hospice care and the end of life—which was profoundly difficult, obviously.

At the time, I was starring in and producing a network television show, The Lyon’s Den. It was fighting for its ratings life. If I took time off, the show would be canceled. I was responsible for 150 crew members, so I had to find a way to do both. My time was divided equally between trying to save the television show and trying to save my mother’s life. I don’t know what’s more stressful, having to quit your job or not being able to quit your job. (The show, by the way, was canceled.) Fortunately, I had brothers to pass the baton to. We’re also a family that has some means, and we were able to bring in people as needed. For people who don’t have that, I can’t imagine how hard it must be.

 

  Rob (left) and Chad Lowe with their mother Barbara in 2001. Lowe and his siblings cared for their mother after she was diagnosed with breast cancer until her death in 2003. Kevin Winter / Getty 

There are so many little ways a dedicated caregiver can be a game changer—someone who can dramatically increase the chances of a successful outcome for your loved one. It is critical, for example, for patients with a serious illness to have a third party with them at doctor’s appointments. When I was helping to promote an awareness campaign for a new chemotherapy drug in 2002, I came across a startling number: Patients often retain just 10 percent of the information they are being given. Ten percent!

On top of that, there is the negotiation of medical coverage, which requires phone calls, weeding through paperwork and talking to insurance companies and doctors. I remember thinking, Jesus Christ, if I were sick and had to do this on my own? I don’t think I could get out of bed in the morning.

The people we are talking about—the friends and family members who are out there doing crucial work—are unpaid. Watching a loved one go through an illness, possibly ending in death, is stressful and depressing. Add financial and scheduling burdens, and the load for caregivers is enormous. To them I say, Don’t forget about yourself. When you get on an airplane, the crew says, “Secure your own mask first before helping others.” Why? Because without you taking care of yourself, you can’t take care of anybody else.

It’s an intimidating role to step into, and there’s no set way to do it. You don’t have to be perfect. You don’t have to know all the answers. You are likely to make some mistakes—and that’s fine! Just know that the care you give has the potential to be one of the most rewarding acts of your life.

Taking care of my mother was scary, unbelievably stressful and painful. It was also a time to be with her in a way that might never have happened under other circumstances. When she passed in 2003, I felt that we’d had the talks we needed to have, that we’d spent the time together we needed to spend. I have friends who’ve been through deaths of parents and they feel cheated; if only they’d been able to tell them how much they loved them, if only they’d done this or that. One of the hidden gifts of being a caregiver is that you’re with them. You’re able to do and say all of those things in its proper time.

So be present for it. There is every reason to believe that you will look back on this chapter with satisfaction. In the meantime, don’t hesitate to get help. That’s why I’ve partnered with EMD Serono and EmbracingCarers.com, where you’ll find invaluable information regarding everything you’ll be, or are, going through.

As told to Anna Menta.

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Rob Lowe: Who Cares for the Carer?